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Post Here To Join Celiac.com's Online Support Group With Live Chat Meetings! (Free)


Scott Adams

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Scott Adams Grand Master

Oh, if you haven't already subscribed to email updates on this thread, please do--just "Follow This Topic" at top right.


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  • Replies 81
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SkyBlue4 Apprentice

Thanks! I never noticed the "follow this topic" button.

gloriacatwoman Newbie

I am new to the gluten free eating and would love a forum/chat room.  Especially getting up to date information.  Thank you.

ptkathy Newbie

I am interested in this as well. Diagnosed in July 2013, still adjusting.

moosemalibu Collaborator

The group is growing nicely!! :)

justneguy Newbie

Newly diagnosed Celiac.  Depending on times, I would consider participating.

marlene333 Rookie

I would definitely be interested in this, but I just do not know how much time I will have to do a regular follow-up or participation.  I do use this website to check to see what products are gluten free...(I do have Celiac Disease).... and have found it VERY helpful.  If you want to contact me, reply and I will check a little later.  Thanks, Marlene


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Kath Urbahn Newbie

I absolutely would be interested in joining an online support group.  I know my sister would be, too. 

Scott Adams Grand Master

Can anyone help Personal Message all members to make sure that they are set up to  "Follow This Topic" at top right? Whoever does this should probably include a link to it:

https://www.celiac.com/forums/topic/105252-post-here-to-join-celiaccoms-online-support-group-with-live-chat-meetings-free/

 

My hope is to plan a first live chat meeting sometime next month.

1desperateladysaved Proficient

 

I've been thinking about starting a "Celiac.com Online Support Group" which would hold regular online meetings here in our "Live Chat" area? I am hoping there are others out there who might be interested. Please let me know if you are:

  1. Interested in joining such a group;
  2. Interested in helping to lead or otherwise help out with such a group;

To join just create a forum account, then make a post in this topic, then click "Follow This Topic" at top right.

 

Our goal is:

  • To help our members adjust and deal with being gluten-free;
  • To help our members adjust and deal with the effects of celiac disease and gluten sensitivity;
  • To provide a friendly and convenient way for our members to meet and exchange information online, including regular live chat support group meetings.

 

I will join, if I am needed, and available for the meeting times.

gfyvr Newbie

Happy to help out and moderate/answer questions if you wish, especially from a Canadian aspect, which is where I live!  Diagnosed in 1983, and I have followed this website since its inception, I currently moderate several Facebook pages and have run a Chapter of a Celiac Association, along with putting on lots of seminars and events through the years.  I have also travelled extensively mostly with work however some on vacation, through Canada, Europe, USA, Central America, Japan, Australia and New Zealand.

 

I have several auto immune related medical conditions (along with unrelated medical conditions now), Celiac being diagnosed 5 years after Graves Disease - although they did not know about the auto immune connection back in the 70's and 80's as Celiac was still listed as a rare disease.

 

The best learning experience I had within the last year was attending the bi-annual Symposium for Celiac Disease in Chicago this past September, where all the top Celiac doctors and researchers met and discussed the current and future for Celiac Disease and Non Celiac Gluten Intolerance around the world based on current research taking place.  It truly was an eye opening experience, especially to hear how a group of these experts are helping get people diagnosed in Third World countries, such as parts of Africa, where their primarily meal is also couscous (which is wheat based) and how to cope with their new diet.  I never thought I had it bad 30 years ago when I was diagnosed as I was so happy to get better and just eat really plain food, however when you have little money and only one affordable type of food that is a big issue.  No longer is celiac disease a Northern European descent disease - it truly is affecting people around the world. 

 

I look forward to chatting with all of you!

gfyvr Newbie

Can anyone help Personal Message all members to make sure that they are set up to  "Follow This Topic" at top right? Whoever does this should probably include a link to it:

https://www.celiac.com/forums/topic/105252-post-here-to-join-celiaccoms-online-support-group-with-live-chat-meetings-free/

 

My hope is to plan a first live chat meeting sometime next month.

Would be great to help out however I seem to have some posting restrictions on my account despite it being 3 years old now.  I guess I did not post enough in the past... :)  If you can deal with that then I can PM people if you wish.

GF Lover Rising Star

Would be great to help out however I seem to have some posting restrictions on my account despite it being 3 years old now.  I guess I did not post enough in the past... :)  If you can deal with that then I can PM people if you wish.

 

Hi gfyvr, and Welcome.

 

Your restriction involves the number of posts and not by how long you are a member.  Perhaps you would like to post more about your journey and introduce yourself to others in the Forum.  That should help you get closer to getting your restriction lifted and would be great for other members to get to know you.  

 

Colleen

RNGayle Enthusiast

Just joined this forum. I have been using this website to help with the myriad of questions that have arisen since I went gluten free (the last 6 months.) I had a food sensitivity panel done back in May of 2013 which showed I was sensitive to a number of things, including wheat, gluten, rye, barley, dairy, eggs, soy, etc. I was surprised at all except the dairy. I figured that one out myself. It took me a couple of months to eliminate gluten. Like a lot of folks, I was in denial because I was a gluten addict. I finally did eliminate the gluten starting in mid July 2013. I had no idea where that would lead. Now, I'm afraid I've been off gluten too long to get tested for Celiac. It's a tortuous thought to consider a gluten challenge just so I can get tested for Celiac. It's bad enough when I am exposed to trace amounts accidentally. Hoping to learn more here. Thanks so much!

heymom45 Newbie

I would love to participate in your online support for celiacs!!  I've lived most of my life with celiac disease, but am reaching out for support now, for the first time. I look forward to visiting your site frequently!!

  • 2 weeks later...
Dianaw Newbie

I would love to participate if able.

Scott Adams Grand Master

Poll for members.

Scott Adams Grand Master

If you haven't done so  already, please respond to our poll in this thread regarding future meeting times for the online support group.

 

Also, please post here the possible topics of our first meeting, which I hope to schedule soon.

GottaSki Mentor

Hi Scott-

 

What time zone is being used for the poll?

 

Thanks!

WinterSong Community Regular

I'm game!

kharmison Newbie

An online support group would be great!

Scott Adams Grand Master

Please answer the poll for your own time zone...

 

Hi Scott-

 

What time zone is being used for the poll?

 

Thanks!

NoWheatGirl27 Newbie

Please answer the poll for your own time zone...

I'm interested! Eastern standard time here. New to celiacs after birth of my daughter.

Cincin47 Newbie

 

I've been thinking about starting a "Celiac.com Online Support Group" which would hold regular online meetings here in our "Live Chat" area? I am hoping there are others out there who might be interested. Please let me know if you are:

  1. Interested in joining such a group;
  2. Interested in helping to lead or otherwise help out with such a group;

To join just create a forum account, then make a post in this topic, then click "Follow This Topic" at top right.

 

Our goal is:

  • To help our members adjust and deal with being gluten-free;
  • To help our members adjust and deal with the effects of celiac disease and gluten sensitivity;
  • To provide a friendly and convenient way for our members to meet and exchange information online, including regular live chat support group meetings.

 

I would be very interested in joining this group.  I have been diagnosed for two years and have been on a gluten free diet since.

Scott Adams Grand Master

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  • Posts

    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
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